Pneumonitus

[Jaycee61]

has anyone developed pneumonitus? I have this now and my oncologist isn’t sure if it’s post radiation lung issue or if it’s a side effect of Imfinzi. I only had two treatments of Imfinzi and have not had anything since November 2024. I’m really scared that my lung cancer will come back fast if I don’t start back in the immunotherapy.

[AmyKamp Partner]

I'm so sorry you're going through this. Has your oncologist talked to you about the next steps in your care? If you're feeling uncomfortable, consider seeking a second opinion. It can help you feel more confident with your current treatment plan or if the opinion is different, it can give you more choices. Were you diagnosed with limited stage or extensive stage SCLC? Please feel free to private message me if you'd like.

[Jaycee61 in reply to AmyKamp]

More choices would be nice. I was diagnosed with limited stage SCLC in April 2024. Chemo and radiation done. Started Imfinzi and developed pneumonitis. Currently taking prednisone to deal with the lung inflammation and Imfinzi on hold.

[monkeygirl62]

You sound just like me. I also have gone through only two imfinzi immunotherapy cycles and have pneumonia (I think it's the combo of low blood work and the drug) and just finished antibiotics for the lungs infection. The pneumonia showed up on a PET scan and of course now I will have another PET scan in two months. I am still kind of coughing. But I am starting to feel better but I do rest when I feel the need to. My doctor hasn't said anything about it being the immunotherapy but I sure think it is. It showed up between the two cycles. I also didn't have anything in November for SCLC. Hugs 🤗 I hope you feel better soon.

[Jaycee61 in reply to monkeygirl62]

That does sound very familiar. How are you feeling about not getting the immunotherapy? Seems that it’s what keeps the cancer away for people. If we don’t get it, then what? I feel like I have just been chasing the side effects of the chemo, radiation and now the Imfinzi since the middle of November. Now I take prednisone for the pneumonitis and have trouble sleeping and am hungry all the time and I’m still coughing. What next?

[monkeygirl62]

I get the immunotherapy regardless, my doctor would just lower the dose if need be. She didn't stop any of my treatments. We are powering through since there's not a lot of options with sclc. But the chemo just like radiation keeps working for awhile even a few months after finishing the treatment. And from what I know that we have to wait 6 months between before we can do chemo again. There are clinical trials and my oncologist already brought it up to me. But I am not sure I want to do a clinical trial, it depends what is involved. When will they taper you off of the steroid? I know the side effects are not fun at all. Are you on any antibiotics? Did your doctor stop the imfinzi immunotherapy? Did she say why? Blood work or pneumonia or both? Did she mention clinical trials?

[Jaycee61 in reply to monkeygirl62]

I was on antibiotics but they didn’t work because I have pneumonitis. It’s a lung inflammation and pneumonia is an infection. Never knew there was a difference. I had a ct scan then a pet scan and they still did not know if it was caused by the radiation or the Imfinzi so the doctor wouldn’t give me another treatment of the Imfinzi until I take the prednisone. Will start tapering off next week. Skipped December and January treatments already.

[monkeygirl62 in reply to Jaycee61]

Oh wow ok didn't know the difference either until now. I hope what I have doesn't morph into pneumonitis, no wonder you are on steroids. Poor sweetie. My oncologist knows I would just beg and insist on doing the treatments, that's what I did on the first one, she didn't want to give me the treatment. So instead she just lowered the dose so I got my first treatment. I have the pneumonia but still had my second treatment, I was nearly done with the antibiotics by then and my lungs sounded clear. I also have stage 4 metastatic breast cancer and in my left breast, left underarm pit 6.3 cm, lungs, liver, and right adrenal gland and left ovary. I only have one tumor in right upper lobe of 3.4 cm of SCLC which has shrunk. Unfortunately some of the areas are the same areas SCLC goes to. But my liver lesions are gone and the rest of my breast cancer spread has stopped and shrunk quite a bit and very stable. So I am on two breast cancer drugs and then just this one SCLC tumor to deal with but that's worse than everything else combined. I wear a mask like religiously. Prayers for you for treatment to move forward and for you to have great results and no side effects anymore. Hugs 🤗. Alicia

[Jaycee61]

wow. You have a lot more to deal with than I do. No spread yet. Hope your treatments work for you. Jodie 😊

[IGotThisPeace]

I also developed pneumonitis after 5 Imfinzi treatments. My Oncologist stopped one Imfinzi immunotherapy treatment and put me on prednisone and an antibiotic for a month to prevent it from pneumonia. I went back last week and the pneumonitis is better so we continued the Imfinzi. Prednisone will bring down the inflammation. Praying you get back on immunotherapy and feel better.

[Jaycee61]

thanks. I go back on Feb 6th. Hoping to continue the treatment.